“Guilt is a feeling that stayed with me” – Honey’s story

Honey 1

Honey went into labour at 38 weeks and didn't expect her baby girl Sophie to end up in NICU. Honey shares details of her experience of being in neonatal care with a full-term baby and how it impacted her.

Listen to Honey's story

Click the 'play' button to hear Honey's story in her own words.

After being on the waiting list for IVF, we were very lucky to eventually conceive after three years.

I had an amazing pregnancy. I was the person that every other pregnant person hates - I didn't have any sickness or headaches or backaches, and I wasn’t bloated or constipated.

At times I couldn’t believe I was pregnant. I was even offered a home birth, but luckily I said no.

At 38 weeks exactly, I went to the hospital to be induced as my water’s broke the day before. It was a really long labour at around 30 hours. When it came to pushing my baby girl out, her shoulder got stuck.

They had to use forceps to pull her out, which caused a brain injury.

Our daughter Sophie was sent straight to special care as she wasn't breathing when she was born. At the time we thought that it was a horrible labour but everything was okay now. We had her with us overnight and she was feeding, so we thought we’d be going home the next day.

I was kept in overnight because I had an infection, was really badly torn and needed to recover from the episiotomy.

The next day, I went to see Sophie in SCBU when she suddenly stopped breathing. She turned blue and was having seizures, so she was put on life support.

They told us that she needed to go to a higher-grade hospital, so she was transferred to a specialist neonatal intensive care unit. Again, we still didn’t know what was going on but from the minute we got to St. Mary’s Hospital in London, I felt a bubble of safety from the staff.

The care for Sophie was absolutely incredible – the staff knew what they were doing and they communicated everything so clearly.

One day Sophie had three or four different tests and they put a little certificate at the end of her cot saying, ‘I've been amazing today,’ which I thought was really lovely.

The doctors really cared for us as a family rather than just our baby. They made her dad and I really involved in her care.

They always asked: “Does daddy want to feed today?” Or sometimes the doctors would say: “We do need to talk to you, but we'll wait until dad comes and then we'll all have a chat together.”

Being on the NICU is so traumatic. It's like the world stops moving, like night and day doesn't really happen – there’s no sense of time.

It didn’t feel real. Sometimes reality would hit and I’d think ‘I can't believe we're in this situation’, but we went into robot mode and kept going.

Honey 2

Sophie was in NICU for three weeks. They found out that she'd had a stroke due to the pull in labour so she had a weakness down one side of her body.

They couldn't really tell us how it would affect her life. Initially they said, although it's mostly physical, it may well affect her cognitive function.

It was always a case of watching her. Did she roll over at that time? Will she sit up at that stage? Will she stand up? Will she walk?

When it was time for discharge, they said she was healthy enough to come home, but they didn’t know what her future would look like.

It was quite a scary time to bring a baby home that potentially could have an epileptic seizure or something else.

We didn’t get that much support when we got home and I remember calling them to ask questions, but I felt like I was burdening them. They reassured me that I could call and ask anything - they were my safety net.

I won’t have another child because my mental health isn't good enough. I was diagnosed with PTSD when I got home and was under the perinatal mental health team.

I had lots of physical injuries as well and still need another operation to sort things that haven't healed properly.

Talking to people who understood me really helped.

When I finished therapy, I joined a group of women who have had perinatal mental health problems during their pregnancy. We meet every month to try and raise awareness of perinatal mental health.

There are support groups out there and I’ve found those quite helpful – they give you comfort in knowing that you're not alone.

Guilt is a feeling that has stayed with me. I grew this baby inside me and couldn’t deliver her safely.

Then when Sophie was in NICU, it felt like I was failing as a mum because I couldn’t hold, cuddle and kiss her or feed her how I wanted to feed her.

Sophie lives with cerebral palsy, on the very mild side. She's currently under the paediatrician, physiotherapist and the occupational therapist, but she’s doing really well and recently had her third birthday.

I always have a horrible run up to her birthday because the painful memories come flooding back. One side of me is so ecstatic and wants to celebrate her birthday and then the other side wants the day to be over.

I just feel really lucky to have her here and see her living life, and I’m so grateful for everything the hospital team did for us.